taking you outa here in my pocket

Well, there were lots of new things again today.  It started out with people coming to draw blood samples three different times which is always hard for her. The docs also wanted a urine sample, so she had to have a plastic bag attached with tape to collect it. The day was capped off with an upper GI scan.  Sophia had had to be NPO (without food) for the previous four hours, so she was good and hungry for the barium.


Patient transport (which would have involved one of us holding her while being pushed in a wheel chair) was busy, so luckily they just let us walk down with her to pediatric imaging.  It turned out to be the hardest procedure yet.  She was strapped onto a board with her arms extended straight out over her head and velcro strapping her in.  They rotated her upside down and on her side to get different views, as though she was a pig being roasted.  After the Danny sling and car seat experiences, we knew that she really dislikes being restrained and that this wouldn’t be easy.  She was extremely unhappy during the whole procedure, which involved reinserting an NG tube to put the barium in so the radiologists could see what it did in her stomach and esophagus.  We could only touch her little hands as they stuck out above her head, rub her forehead, and talk to her–but it didn’t seem to help.  I’m afraid she is going to associate our voices with all of this pain.  It is so hard to stand there watching her in such discomfort and feeling helpless to comfort or stop her pain.


The results weren’t good–she has significant reflux; they watched it coming back up throughout the procedure and said the sphincter between her stomach and esophagus was wide open.  I tried to find out whether the radiologist thought she’d need the G-tube/Nissen, and all he would say is that her reflux was significant and her other doctors would have to determine what to do about it.  We want to approach this very carefully, so will be doing research and asking lots of questions.  We’d love for her not to have the pain of vomiting so frequently and the discomfort of eating, but don’t want her to have any more procedures than are absolutely necessary.  They did start her on Prilosec last night to help with the acidity.  


The radiologist also found that Sophia has a condition that results in her stomach emptying more slowly than it should, so she just started medication for that tonight.  He said the GI doc would be surprised by that, so it’s unclear to me whether there might be additional treatments. She’s got so many meds to take–I had to bring a larger syringe today.  Now we give them to her all mixed together with french vanilla flavoring to make it sweet.  She gets a couple drops at a time so she doesn’t gag.


The last issue they found in the test was that one of her stomach-area ligaments is in an odd place, which could mean that she has a mal-rotated colon.  They won’t know until they do the same barium test “on the other end,” as he put it.  We have to wait until the barium is out from this test first, so it will be another three days or so.  Although it could be done on an outpatient basis, it doesn’t look like we’ll be going home very soon.  If she does indeed have a mal-rotated colon, that would require another surgery.  It apparently is very serious as left untreated it could result in the bowels dying.  


Right now she is resting peacefully, after being forced to wait 5 hours she finally got to eat, so she is much happier.  That will soon come to an abrupt end, however, since we are waiting for the night nurse to attach another “urine bag” as they didn’t collect enough in the first one.